Wednesday, October 19, 2011

Dragon Mom

I don't really have a whole lot to say today, but I just wanted to share this column from the Sunday New York Times that I found incredibly touching. Having a baby born with an incurable and untreatable genetic disease is a heartbreaking and devastating diagnosis, but this amazing mother shares her perspective on the truly important things in life.

Notes From a Dragon Mom

Emily Rapp is the author of “Poster Child: A
Memoir,” and a professor of creative writing at the Santa Fe University of Art
and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one
eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish
and it suits him.

I want to stop here, before the dreadful hitch:
my son is 18 months old and will likely die before his third birthday. Ronan
was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into
a vegetative state. He’ll become paralyzed, experienceseizures, lose all of his senses before he
dies. There is no treatment and no cure.

How do you parent without a net, without a
future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not
without a profound understanding of the human experience or without hard-won
lessons, forged through grief and helplessness and deeply committed love about
how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature,
future-directed. I know. I read all the parenting magazines. During mypregnancy, I devoured every parenting guide I
could find. My husband and I thought about a lot of questions they raised: willbreast-feedingenhance his brain function? Will music
class improve his cognitive skills? Will the right preschool help him get into
the right college? I made lists. I planned and plotted and hoped. Future,
future, future.

We never thought about how we might parent a
child for whom there is no future. The prenatal test I took for Tay-Sachs
was negative; our genetic counselor didn’t think I needed the test, since I’m
not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews.
Being somewhat obsessive about such matters, I had it done anyway, twice.
Both times the results were negative.

Our parenting plans, our lists, the advice I read
before Ronan’s birth make little sense now. No matter what we do for
Ronan — choose organic or non-organic
food; cloth diapers or disposable; attachment parenting or sleep
training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to
matter. We enroll our children in music class or take them to Mommy and Me swim
class because we hope they will manifest some fabulous talent that will set
them — and therefore us, the proud parents — apart. Traditional parenting
naturally presumes a future where the child outlives the parent and ideally
becomes successful, perhaps even achieves something spectacular. Amy Chua’s
“Battle Hymn of the Tiger Mother” is only the latest handbook for parents
hoping to guide their children along this path. It’s animated by the idea that
good, careful investments in your children will pay off in the form of happy endings,
rich futures.

But I have abandoned the future, and with it any
visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a
Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We
don’t expect future returns on our investment. We’ve chucked the graphs of
developmental milestones and we avoid parenting magazines at the pediatrician’s
office. Ronan has given us a terrible freedom from expectations, a magical
world where there are no goals, no prizes to win, no outcomes to monitor,
discuss, compare.

But the day-to-day is often peaceful, even
blissful. This was my day with my son: cuddling, feedings, naps. He can watch
television if he wants to; he can have pudding and cheesecake for every meal.
We are a very permissive household. We do our best for our kid, feed him fresh
food, brush his teeth, make sure he’s clean and warm and well rested and ...
healthy? Well, no. The only task here is to love, and we tell him we love him,
not caring that he doesn’t understand the words. We encourage him to do what he
can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have
come to understand this term in our culture; he will never walk or say “Mama,”
and I will never be a tiger mom. The mothers and fathers of terminally ill
children are something else entirely. Our goals are simple and terrible: to
help our children live with minimal discomfort and maximum dignity. We will not
launch our children into a bright and promising future, but see them into early
graves. We will prepare to lose them and then, impossibly, to live on after
that gutting loss. This requires a new ferocity, a new way of thinking, a new
animal. We are dragon parents: fierce and loyal and loving as hell. Our
experiences have taught us how to parent for the here and now, for the sake of
parenting, for the humanity implicit in the act itself, though this runs
counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too
scary. Our grief is primal and unwieldy and embarrassing. The certainties that
most parents face are irrelevant to us, and frankly, kind of silly. Our
narratives are grisly, the stakes impossibly high. Conversations about whichseizuremedication
is most effective or how to feed children who have trouble swallowing are tantamount
to breathing fire at a dinner party or on the playground. Like Dr. Spock
suddenly possessed by Al Gore, we offer inconvenient truths and foretell
disaster.

And there’s this: parents who, particularly in
this country, are expected to be superhuman, to raise children who outpace all
their peers, don’t want to see what we see. The long truth about their
children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would
save my son. I would take my chances on a stripped battlefield with a sling and
a rock à la David and Goliath if it would make a difference. But it won’t. I
can roar all I want about the unfairness of this ridiculous disease, but the
facts remain. What I can do is protect my son from as much pain as possible,
and then finally do the hardest thing of all, a thing most parents will
thankfully never have to do: I will love him to the end of his life, and then I
will let him go.

But today Ronan is alive and his breath smells
like sweet rice. I can see my reflection in his greenish-gold eyes. I am a
reflection of him and not the other way around, and this is, I believe, as it
should be. This is a love story, and like all great love stories, it is a story
of loss. Parenting, I’ve come to understand, is about loving my child today.
Now. In fact, for any parent, anywhere, that’s all there is.